Scientist with rare ALS genetic mutation looks to experimental treatment

CBS Saturday Morning Scientist whose mother and sisters died of ALS complications hopes experimental treatment will save his life .chip { background-image: url('/fly/bundles/cbsnewscore/images/chip-bgd/chip-bgd-cbs-mornings-saturday.jpg'); } By Jon LaPook Jon LaPook Chief Medical Correspondent Jon LaPook, M.D. is the award-winning chief medical correspondent for CBS News. Since joining CBS News in 2006, LaPook has delivered more than 1,200 reports on a wide variety of breaking news and trending stories in the health and medical fields, as well as feature stories on music, lifestyle and profiles of entertainment stars. Read Full Bio Jon LaPook Updated on: April 4, 2026 / 4:33 PM EDT / CBS News Add CBS News on Google Jeff Vierstra's mother and two sisters all died following complications from ALS, or Amyotrophic Lateral Sclerosis, but the scientist and skier is hoping an experimental treatment and the first known attempt to prevent the neurodegenerative disease can help save his life.Vierstra was only two years old when his mother died. All her siblings also died of ALS in their late thirties and early forties. The 41-year-old tells CBS News he isn't afraid to ski down an iceberg off the coast of Chile or skydive over British Columbia — what does frighten him is his family history. Vierstra and his sisters, Erin and Leigh, all tested positive for a mutation of a gene called "FUS" that is crucial for normal cell function, especially nerve cells. The mutation made it likely they would develop ALS.  Jeff, Erin, and Leigh. Jeff Vierstra "Living with that sort of like cloud over you is like mentally and emotionally like really difficult," Vierstra said. About 10 to 15% of all patients with ALS have a genetic form of the disease, research shows. About two-thirds of those genetic forms are familial, meaning multiple generations of the family have been affected, according to Dr. Neil Shneider, a Columbia University neurologist who studies genetic forms of...